Category Archives: Special

In September I was terrified of Bridget entering kindergarten and transitioning from the Spinnaker program to a new self-contained special education classroom. Even though I knew the special education teacher for years, leaving the sanctuary of Spinnaker was heart wrenching.

I knew I was over-reacting and worrying for nothing. However loud the brain is shouting, the heart beat of panic is louder. Six months later I am happy to report that not only are we surviving kindergarten, Bridget is thriving. Continue reading →

A few weeks ago I wrote about a new program at Abby’s school that celebrated Special Needs Awareness Month. I had to take down the children’s challenges as the program had ended (I did save a few) but thought you might like to see how incredible this project turned out.We incorporated celebrities who are outspoken about their difficulties and placed the students (and others) challenges above, below, next and over them.

Each week the poster of the celebrity changed, but the children’s never did. To show that you might always have a disability, but you will always be you.

Then the kindergarten teachers took our idea and blew us away, having the students draw their challenges.

I am overwhelmed by how honest and forthcoming the students were. There were so many honest conversations at home, at school and on the playground.

This video was shown on World Down Syndrome Day. The one response from the kids? They wished it showed all disabilities not just Down Syndrome. But they understood the message: your friend is your friend. It’s as simple as that.

It’s quite simple. We owe Boo’s life to Boston Children’s Hospital. Those first scary days in the NICU? It was the nurses who saved my sanity. I will never forget the panic on the doctors face when he gave Boo oxygen and said she needs to be transferred. NOW.We went to Children’s not because we were scared. When Boo was born I told the nurses and the doctors that she was breathing funny. They sent us home, me the over-reactive new mother. A complete 180 from when I had Abby and they wrote in her chart, failure to bond.We took Boo home. Went to the Pub because she was “fine” and it was David’s birthday. This is back when they gave you a free meal on your birthday. The next day the VNA nurse came to our house to do a well-being check on Boo and asked, why is she breathing so funny. She was breathing at 110 breaths per minute. The average newborn breaths at 30 breaths per minute. Two hours later we were at Children’s Hospital. Sure that this was a fool’s errand and again we would be told that we were overreacting we brought Abby.And spent the next five hours with Boo hooked up to monitors and her sister seeing first hand that Boo wasn’t safe. David and Abby went home at 11pm when we finally got a room. It was 2am when after an ECHO and found out she had FIVE holes in her heart. Then came that scary moment when Boo lost consciousness and I received my first introduction to the NICU. They asked me to leave so they could do some tests. I will never forget coming back, seeing nurse straddling my 5 day old newborn and screaming at another nurse that I couldn’t be there right now. Not because I was interfering but because she didn’t want that image in my head.But it is. To this day I see that nurse, Allison, straddling Boo trying to get blood out of dehydrated veins. I see Mary, who when Boo passed out in my arms and I was alone screaming HELP HER and she did. Then she taught me not only where the oxygen was but where the HOLY CRAP button was. I will never forget going home one night to try to sleep but not. Dropping Abby off at Kindergarten and the head of the school offering to drive me back to Children’s because I looked like death warmed over. That morning I went back and Boo wasn’t where I left her. I thought my child had died.For one moment imagine walking into a hospital and not finding your child where you left her. Imagine how it feels that you left your child for eight hours and she wasn’t there.But no, she was safe. Just transferred from the scary NICU to the not so scary part of the NICU. The ward that looked like a cattle barn. 3 patients to every nurse. She was getting stable. We were sent home seven days later. I was terrified. I didn’t want to leave. Boo spent the next two years sleeping on my chest. She ended up with 10 doctors working to keep her stable. Over the next five years she would have surgery on her spine, she would aspirate and be hospitalized over 12 times.Boo survived. Despite our fears. Because of Boston Children’s Hospital.The first year of her life we formed Bridget’s Brigade. Our family and friends have walked every year since. Bridget’s Brigade has raised over $20,000 in support of the only hospital we trust. We walk to fund the research that may someday, far in the future, tell us why Boo must suffer. We walk for the other parents who walk into the NICU and think our child will not come home.Throughout the years we have acquired many specialists. We have held Boo down for sleep studies, lab work, EEGs, surgery and MRIs. We have also watched our child triumph. To do things no one thought she would be able to do. Love her sister, walk and run and jump. She has words. Boo has friends. Boo has more support than I would have ever realized that moment when I thought she was gone from my life.The morning when my heart broke and was rebuilt in an instant.We walk for Boo and the thousand other children who bear unspeakable pain. And the parents who bear witness.We ask you to share our story and support our cause. Last year Boo and Abby kicked off the Walk. We walked with 20 of her friends and this year will walk again. We ask you to please donate to her team:

Every donation, as little as $10 goes towards helping children like Boo. It helps children who are suffering unspeakable pain. It helps parents who have the utmost faith in a hospital to save their child’s life.I only have one thing to be thankful for this week: My Boo and the hospital who never stops believing in her.

Our town is small. We do not have many businesses therefore the tax burden rests on the property owners. Frequently we see battles pitting the school department against the municipal side of the budget. This is the first time, to my recollection that we are putting students (and their needs) against one another.

I am extraordinarily grateful that this article was not about our town. Yet I live with a fear that it will be soon and we should explore ways to avoid it at all costs. Probably because this is the first time I have had a child in the “special education” cohort of the school system.

Which is not quite true. My older daughter goes three mornings a week for extra help in math. She has gone to summer school for math assistance. This is the only subject she struggles in and the school (and tax payers) have supported her needs. I am sure it is for the care they show all students and also to increase the MCAS standing of the school. A quid pro quo, if you will.Boo on the other hand is a different situation. Boo brings tremendous value to her classroom. Her classmates will grow to be more empathetic, understanding of another’s needs and more accepting of their peers. Inclusion means that while Boo is exposed to peers for advancement while she advances their sense of community. But she is a drain on the school system. Boo receives physical, occupational and speech therapy from the school system (which in my opinion should be the responsibility of our insurance company to pay). She has a dedicated 1:1 therapist that is with her during the school day. This is for Boo’s safety (she wanders) and to make sure she can participate in class activities. That is, after all, the purpose of inclusion: to have Boo participate. Without the aide she simply cannot. Due to the layoffs, that other school system has modified some 1:1 care. Now a therapist will have 2 (or more) children under their responsibility. Let me explain why that is an impossible task to give that staff member. Logistically it is difficult. If you take your two children to the playground you know they will not leave. If a therapist takes Boo and her other charge, she cannot have Boo on the slide and the other child on the swing. How can she make sure both are safe? What if one has to use the bathroom? Education-wise it is still ill-advised. The therapist sits at a table with Boo and reviews counting. If she has another charge, how can the children and the therapist concentrate and make sure the program is run correctly and with consistency? Just as a teacher with 30 students in a class cannot make sure every child understands the Vietnam War, a special needs therapist cannot split their attention equally with more than one child and be confident they are getting the most out of the child. Having another child is a distraction for all.

But who should pay? That is really the question and you are probably not going to like my answer.

I believe the parent should pay for some of the care and education. It is our child and our responsibility. However we cannot. We simply do not have the money to pay. Just as the town budget is stretched a parent of a special needs child is under a financial burden unlike no other. Our medical bills are higher, we pay out of pocket for supplemental insurance and at age 5 we are still purchasing diapers, wipes and pull-ups. Due to the amount of physician and therapy appointments we also cannot work 40 hour work-weeks. A family with a special needs child budgets in ways you never imagined. It is constricting and inventive.

Here is where I will again anger many. I also think that the tax payers should not have to pay for music, sports, clubs or electives. English, foreign language, history, math, science? Yes. That is education. But electives, including music and art, should be the responsibility of the parent to pay. Those electives are also a drain on the school system. There are pensions, salaries and healthcare costs associated with those staff members just as the special education staff.

There are a lot more students taking electives than using the special education department.

I am not sure of the answer. I do believe that we should pay a portion of Boo’s care. I firmly believe that our insurance company should have to pay for her therapies that happen in school, including her ABA therapies. I think some sliding scale should be in place to take some portion of the expense off the community.

However, if I am going to pay privately for Boo’s public education than I believe I should also have to pay for my older daughter’s music instruction.

Dear Chicago Tribune,I am not a resident of your city and in fact have only visited Chicago once in my life. But I am requesting on behalf of the parents in your community to redefine the newest tax approach for Kane County.

The premise is nice, from my reading, the intent is to increase property taxes in Kane County, IL to create funds to support individuals with developmental disabilities. As a mother of a child with special needs I usually support anything that will assist my child receive the services she desperately needs.But to call it a disability tax?

How about calling it a social service tax? Or Community Building tax? Or even help thy neighbor tax?

The services provided would include: education, therapy, training and other services to allow those with developmental disabilities the opportunity for independent living. These same individuals with your county’s support would then become a part of your working community.

As a home owner from Massachusetts, I agree taxes are out of control. After all, we are number 6 in the US for highest residential property tax rate.

I do not wish my child’s disability to be a ‘ tax burden’ on anyone. And I agree with the opponents who say that the tax code need to be redrawn and that the federal and state support should be better mandated. However, I am thankful that she is a ‘social burden’ as she enriches everyone’s life she comes into contact. In some ways, I think this is a great idea. Instead of raising your taxes and you not really knowing where the money is being spent, you will see your tax dollars at work. The median household would be spending just $55 a year to impact lives in a meaningful way.

How incredible.

According to the article in the Tribune, Kane County has almost 16,000 residents whom this tax would benefit. I hope it does pass and is used as it is intended and not mired in the bureaucracy that seems to overtake good intentions.

I commend Kane County for taking a proactive approach to inclusion and support. I think it is beyond wonderful that you saw a need for your residents and are doing your very best to enrich their lives.

Like this:

I’ve been really hesitant to write this post. First, I hate to jump on a bandwagon. I also hate being late to a party, even a pity one. Mostly, though, I do not ever want to come across as ungrateful or one that complains.Truthfully, I have absolutely nothing to complain about. I am beyond lucky. I acknowledge that my situation is as wonderful as it is rare. I have a terrific village who supports my sanity. When life gets overwhelming I have some one within a text, an e-mail, a call or a walk to lean on. I get date nights with my husband and girls night in.

Not everyone is this lucky. They are isolated. They stay at home with their child, change how they go to Worship, do not attend family events, cannot find a babysitter and not even think about getting a pedicure. Moms like Kelli try to do everything right. They think that it is less disruptive for their child to stay home. They feel family gatherings are too hard to keep everything together and peaceful.

I do not know Kelli and only know about her circumstance from Julie, Jill and Kristi’s blogs. But I do know that not every child is like Boo. Some children with special needs are violent. They hurt themselves and those who love them the most.

When Kelli tried to kill herself and her daughter there was a lot of condemnation. People have a difficult time understanding suicide. Let alone a mom who tries to harm her child.

The sad truth is, Kelli is not the only one out there. Statistically children in the US with special needs account for almost 10% of those who are abused. And they are abused by their caregivers. This is not just the US. World-wide disabled children are harmed more often than typical.

This is just supposition on my part, but I believe the abuse and the killings and the suicides happen because the parent has little or no support. We are very lucky where we live. Our Boo has a terrific school, afterschool therapies and if she was autistic we would be eligible for in-home support. But those therapists and teachers deal with our children hitting, spitting and hurting them. Yet they love our kids. They want our children to succeed.

Parents and caregivers are becoming the walking wounded, suffering from post-traumatic stress of living and working with a child who punches, kicks, sets fire to the house and destroys relationships. We love our children. We hate what their disability makes them do.

There is a difference.

There is also a reason why persons who work with children and adults with special needs have an extremely high burnout rate.

While our children in the US have a tremendous amount of government support available (if you know where to ask) for them, there is zero support for the caregiver. I am not talking about financial. I am talking about emotional support. That shoulder that you need to lean on.

Since I have that support I know full well what those of you without it must be feeling. Know that you are not alone but you have to let us know you need it. My friends know because I go to them. I break with Boo’s therapists and vent to her aides. Sure a few will reach out, but the responsibility is mine to say I cannot do it on my own.

So I implore you, the Kelli’s out there, to know you are not alone. But you need to scream and raise the white flag.

And if you know a parent out there with a child who has special needs reach out. Stop by their house tonight with a pizza and a bottle of wine. Stop by and check in on them. Keep inviting them to events, even if they have to say no. Remember that e-mail is great, but you can hide there. Call, speak to them. Make sure they know you are available to listen without judgment.

Let what happened to Kelli be a lesson to all of us to reach out before there is no one there to catch.

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This is, by far, the easiest post I have ever written. Boo has struggled since her first year to overcome sensory issues. She doesn’t have a severe disorder that impacts our daily life. Jen Kehl can tell you more about that.We are not alone in our navigating how to expose Boo to the sensory input she needs while balancing her innate fear. If you are a visitor in Our Land you will see a lot of other examples of having a child that is afraid of hair. Boo doesn’t so much suffer from her sensory issues. It is more like she avoids them and it is easy to do so. For example, snow. We do not have a lot of it, well except when Nemo killed our February vacation. Grass? That was the best defense against Boo’s bolting. I really was kind of upset when she overcame that fear.

Boo still has issues with a lot of sensory input. Be it noise, texture, smell or sand. Boo despises getting her hair brushed, as one example. She has a paralyzing reaction to sand. You can feel her heart racing, she whimpers low in her throat like a cornered animal. With a lot of therapy during and after school, Boo worked really hard to overcome her fear.The difficult part of this is that Boo doesn’t realize she is afraid. She doesn’t have that comprehension. She only knows that she “no like”. But we live surrounded by the beach. This was one fear, unlike snow, that she had to overcome. Selfishly the rest of the family really enjoys the beach. In truth, we kind of forced her to like it. The first few attempts were horrid. But we persevered. Every time we got to the beach she would whimper. We forced her out of the Jeep a couple of times over the summer. She would sit on my lap, but eventually (sometimes it took hours) she would stand on the sand. We kept it easy for her, always in her sneakers. Never forcing her to do more than she could. And then, my friends, Boo danced.

This is how I finish the sentence, My best summertime memory this year was Boo dancing on the beach.

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There are heroes and then there are SUPER HEROES. Those individuals who leapt buildings in a leaping bound, the wonder women with magical bracelets and an invisible plane.Man, I’d like an invisible plane. That would be super cool.When I was younger I wanted to be a member of the A-Team. I thought the Colonel Smith was the best, loving it when a plan comes together. Who wouldn’t have a crush of Faceman? I wanted to big brother like BA Baracus (I thought at least one of his necklaces would look good on me). And Madman Murdock? He was just like this Uncle I had…Anyway I thought, as a tween, I would be cool and safe as a member of the A-Team.

Then I grew up.And I realized the superheroes are not that common. That a plan doesn’t always come together. That you need to sometimes be a BA to get things accomplished. I also realized something else. Superheroes come in all ages.The woman who hugged another in an elevator.The father who pushes his son every year in the Boston Marathon.The soldiers near and afar who put their lives at risk every day so I can sit in my home and drink my wine.The makers of my wine.The grandmother who looked at a child having a temper tantrum and told the parents it does get better.The doctors who saved my daughter’s life.The therapists who enrich Boo’s life making her the best she can be.The school teachers who have more patience than Saint Teresa.The friends and family who answer my HELP ME calls.The people who run into the emergency rather than running away.But I do have one SUPER HERO….

Allie.

Who looks at her sister with love and empathy. Who has adored her sister from the moment they met.

The sister who braved multiple hospitalizations to see her baby sister. The girl that explains to other children that Boo has a “funny” pattern in her brain that makes her “special”. The girl who has attended so many therapy appointments that she can run her own. Last week, after coming home from a sleep over, Allie took the time to go through Boo’s speech therapy:Boo: I EKRJWORYOWEHFOFJSFROREEEEEEEEEEAllie: IBoo: IAllie: WantBoo: WantAllie: ToBoo: ToAllie: HaveBoo: HaveAllie: CookiesBoo: COOKIES!!!!!This is a super hero at just nine years old. Allie possess the ability to calm her sister, to hold on while Boo deal with a hazmat situation, who calms a head-banging moment, helps her swing and jump. Allie is the protector and the “mad” girl who cracks Boo up with her antics. Kind of like the A-TEAM all mixed into one little package.It helps that she is cute beyond belief.

I hope to she maintains her membership in the hero society. I cannot wait to see how she changes the world.Who’s your hero?

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Yes, it has only been 48 hours since my bright idea to emulate Mike and Carol Brady. Funny it didn’t take a half-a-year for me to begin failing. I know, you want to pat me on the head and say give myself a break.But truthfully I sometimes wonder where the brakes are.

Boo has been out of her school program for just over a week. I thought going away would be a great idea. We went camping and instead of camping we dodged rain storms. Being away set off her bowel issues.

Which I was prepared for, seriously, I have enough meds to rectify either option: Hazmat or Obstruction. What wasn’t I prepared for was Boo’s regression to happen so quickly. Only two days home from vacation and she is no longer feeding herself, not going to bed without screaming for over an hour (whomever said that children cry themselves to sleep after 10 minutes never met Boo) and having frustration issues.

I just do not know how to calm my child. First she wants her shoes off. Okay, I can do that. Then she screams, bangs her head and throws herself to the floor because they are off. I swear she made her head spin. Maybe it was mine.

I caved and put them back on. Nope, she wanted them off. Then on. Then I want a cookie (her, I wanted a glass of pinot grigio–there was still some left in the box). I decide to put on therapist/mom hat and employ the ABA therapies. She wants the shoes off they stay off. She can’t decide between Oreos and goldfish? She gets her first choice even if she runs away asking for a donut.

I’m done at this point. Mike is nowhere to be found. Carol, well I don’t have her hair or patience. So I put on therapy hat…we will by all that is Holy employ ABA. If she wants her shoes on, then they stay on no matter how she screams. She wants cookies? Then she gets her first choice, even after she walks away screaming.

The icing on the cake? Allie comes up to me and says:

Is it times like this you wish Boo wasn’t Boo?

And I break, again. I channel Carol and explain, it’s not Boo that is the problem. It is that Mommy doesn’t know how why Boo is screaming. Why Boo can’t decide between shoes on or off.

Mommy just doesn’t get it sometimes.

That Allie or Mom or Dad can’t “fix” this, we just have to try anything that may work. That I have to put up with behavior I would never allow Allie to get away with. That Allie sees that Boo gets treated differently by her parents. That we have two children that we have to treat differently.

That is not Boo’s fault or really mine. But that whole Catholic guilt thing…with an added dose that as a mom we are not doing quite enough makes me wonder.

Why

Why don’t I have the answers. A mom is supposed to, right?

Why does Boo get so frustrated?

Why can’t she use her words?

Why am I so whiny. For Cripes sake my child has words, and can walk and can show her frustration. There are so many parents out there with less.

Why, oh why must I be down?

Why the freak can’t she realize she is supposed to sleep alone. Yes, she slept in my arms for a weekend camping. But that’s over now. Why does it take five nights to undo two?

Why if I have to be Carol is there not an Alice? I mean, seriously people do you think Mike and Carol would have been so calm without their Alice.

Just think how much easier life would be with Alice.

There would be pork chops and applesauce. That I wouldn’t have to cook or force Allie to eat.

Alice knew that the one thing not to stomach was a perfect kid. Although I wouldn’t mind that perfect kid for an hour or two.

Alice knew that a five letter word for exhaustion was ALICE. Another good choice would be MOMMY

Alice, when asked an unanswerable question would reply if the right answer meant a trip to Europe. I wonder if the girls would have to go?

Anyway, I kind of got off point (are you still out there), is I wonder if this gets easier. I thought Boo’s first days in the NICU were bad. Then I thought, when she threw up everything I put into her, that this was the hard time. Then and then and then….there are a gazillion times I thought life would be getting easier.

Then there was summer break.

And sleepless nights.

Wondering if I am every going to get being Boo’s mom right.

And so thankful, from the bottom of my soles, that Boo is back in school on Monday.

Like this:

There are some days when all I want to do is give in to Boo. When I want to just give her a cupcake, okay a third cupcake. I know, in my heart, that the ABA therapies are working. That Boo is better with all the work her therapists do with her on a daily basis. Sometimes the work gets the best of me.At workshop when Boo gets stubborn they wait her out. They make her do her work (I wish they could make Allie do her homework). But at home I struggle. If I ask Boo what sound a monkey makes and she doesn’t answer we move on. After all there are dishes and laundry to do, hugs to be given and Allie’s homework to be done. Concerts to be torturedenjoy. Oh and dinner to be made. At school she HAS to answer. Now I know what you are thinking. Does it really matter if Boo answers OO AA for a monkey sound. Probably not. But if some one asks Boo her name she HAS to answer. Especially if she goes missing. Since she refuses to say her name that is an issue. And it all starts with OO AA.

Actually it starts with her name. She will say it, sometimes quietly, when asked. But on her terms, her oh so stubborn terms. She digs in on the most surreal things. Okay surreal to me. Why doesn’t she want to say OO AA? I mean she said it the whole way to Niagara Falls. Over and over again. I wish I could have an inkling into how her mind works. I spoke to her speech therapist about it. She feels that sometimes Boo has a difficult time finding the word in her brain. Like there is a detour or misfire. She will consistently say cow but then the third try she says cat. Almost as if the repetition is tiring on her brain. She encourages us to continue fighting for those moments when Boo is in the moment and can say the word or perform the action we are demanding. Her SPT reminded me to be the mom and not the therapist. That it is a hard, difficult balance between the two hats we have to wear. And that’s the hardest part of my day, when I have to be the therapist and not the mom. So we went home and had cupcakes for dinner.

This extremely non-funny post for the Finish that Sentence Friday is to be blamed on the hosts. Usually I can go light but well it has been that type of week. What with falling down and all…

Let’s hope next week’s sentence is something like….Believe it or not I let my husband live after he…. ﻿

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(c) Kerri Ames and Undiagnosedbutokay.com (2011 through current date). Unauthorized use and/or duplication of this material without express and written permission from this blog’s author and/or owner is strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to Kerri Ames and/or Undiagnosed but Okay with appropriate and specific direction to the original content.